Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Hannah Grace UPDATE: 11-8-08 So far they have not found a nurse for Hannah tonight, Friday, so please pray that they can find someone…chuck has been out of town on business all week and won't be home til late this afternoon so it has been a long week for me. I started keeping Taylor (my 9 week old grandaughter) on Monday Becky went back to work (she is having a hard time leaving taylor too) Thankfully my mom has been here most of the week and has been able to help with taylor…. Chuck and I did get to go to Jenn & Bob's last weekend but it was too quick. I had my stomach emptying study and we didn't get to leave until after 3:00. We got there late Friday night and had to leave early Sunday morning to get chuck ready for his business trip. It was nice to get away without worrying about Hannah. Hannah had her appt with urology yesterday. They did some video scans of her bladder filling up, they should have seen it empty too but she got too annoyed with all the fluid in her bladder to continue the test. She has a bladder that is too large and stretches and stretches like a balloon…they put in 400cc's of fluid and she didn't even leak. Unfortunately that is not good since she is so small…it appears that her brain isn't telling her sphincter to release it. We didn't get to see when she would urinate. They want us to catherize her 4 times a day and record the results too see if she is retaining urine after she urinates on her own, causing infections. If that doesn't work or she doesn't seem to have a problem with retention we won't have to continue it. He wasn't comfortable putting her on medication since she is on so many other meds and has seizures. At least we know why she can go hours without going and then flood her diapers. All that pressure is what is making her appear to strain to urinate. The "good" news is that this is not the worse kind of bladder problem….it is not damaging her kidneys :) She doesn't appear to have kidney reflux. She hated being cathed and none of us like to do it either :( So pray for ease of that too. Thanks joan UPDATE: 10-9-08 ok, here we go again with nursing issues. Stephanie had been trying to work the fridays we had open but it just got to be too much of a drive for her, so we are back to having every other friday open, starting tomorrow night...so far they haven't found anyone for then. Please pray that they can find someone....this is getting very old :) we have a friend that was one of hannah's first nurses 10 years ago that would like to come back on her case and we would love that...please pray that the agency can work things out...the nurses we do have are not ideal all the time...we do not have a consistent primary nurse...we normally have 1 nurse that would be here 3 nights a week and could keep track of things but now, the we only have nurses that work one or two nights, definately not ideal. Pulmo went well on tues, oops, I forgot to send that :( she had a lot of blood from he ear on Sunday but that is better now... My primary dr said that one of my problems is an inflamation of the chest wall, costachrondritis. He gave me some celebrex to try....my chest is almost constantly in pain now...lifting Hannah doesn't help. I will see the GI dr next week for followup....the dr said a lot of other things can be causing the stomach and under the ribs problem, even my irratable bowel :( joan UPDATE: 10-3-08 Praise the Lord, they were able to switch nurses around and Alice that was here last night is able to come back tonight.    Hannah is still the same although the cough is not quite as hoarse as it was but she is still not coughing up a lot.  Taylor seems to be improving too...   Thanks for the continued prayers joan ********* Hannah is still having thick secretions and a hoarse cough.  She is not coughing up the secretions as well as she usually does, takes a little extra suctioning.  Seizures are about the same… I just realized yesterday that she doesn't have a nurse for wed night…they said they are still looking…since this is Monday, please pray they can find someone…I have to go for an ultrasound at 8am thurs and that will be hard if I have to stay up.    My dr thinks that I do have reflux but a lot of my problem may be my galllbladder too…so I am going for a CT scan tues and the ultrasound thurs.   They are for my stomach and pancreas areas.  He wants to find out what my problem is.   Please also pray for Taylor, she is 4 weeks old today and she is sick with a cold.  Her chest is congested and her nose too, poor baby, but she isn't wheezing and so far her  temp hasn't been too high.  Becky took her to the dr on Sunday morning, and she told her what to watch for…she is mostly just miserable… Thanks joan UPDATE: 9-27-08 This week Hannah has had a lot of thick secretions, both from her nose and trach...coughing more and slight temps....I think she caught a cold. Pray it gets better before it gets worse :) I am not good at getting out updates :) joan UPDATE: 9-15-08 Hannah continues to have more seizures. We think it's "puberty" that causes them but if they continue like this I am going to call neuro. Maybe she has gained enough weight that we may need to increase a med, if we can :( She has been coughing a lot today and thick secretions. Hopefully that is just the weather since we are all having trouble with it... She finished her antibiotic for the UTI and I took another urine sample in for cultures on Thurs. We started the new antibiotic that she is getting as a prophylactic (all the time as a preventative measure). Thanks for the prayers for becky, she is feeling much better with her csection incision. thanks for the continued prayers. UPDATE: 9-4-08 Hannah saw the urologist yesterday. The renal ultrasound looked good. She is scheduled for a video of her bladder in Nov. I think it's a VCUG. She had wet her diaper while we were waiting for the appt and when the nurse measured she still had 117cc of urine still in her bladder :( she is still growing the same bacteria in her urine so the dr started her on bactrum and then she will start a daily dose (prophylactic)of primsol after that to see if it helps the infections. It's funny because I took my mom with us to h's urology appt and then my mom had her urology appt (at another dr) and while we were there my fatherinlaw was seeing the same dr :) Hannah is still having a lot of seizures, not sure why except her schedule has really been thrown off the last few days. She has not been sleeping well either...right now, she is sleeping pretty good and it's been 1 1/2hours :) we will probably go see taylor and becky later. they will come home from the hosptial thursday. UPDATE: 8-24-08 Hannah has still been having more seizures. Secretions are very thick and a lot of them :( We have had nurses every night this week!!! Hannah has appts coming up at dupont...friday(8/29) she has an appt for a renal ultrasound to see what is going on. And then on (9/2) she sees the urologist. I hope we will be able to find out why she has the urinary problems although I just realized I haven't see her strain as much since she was on the antibiotic. School starts here on monday, not sure when Hannah's teachers will start coming to the house again. She doesn't seem to care :) I had the endoscopy thurs. They dilated my esophagus and now I have a really bad sore throat...feels like there is something in there when I swallow. It does feel a little better today. The dr said my reflux has just gotten worse since my last endo. the last time I had one in 06, I was on nexium...insurance got to be too much so we switched to aciphex...guess that didn't help as much as the nexium did...I am now taking the aciphex 2times a day. Still not able to eat a lot...thanks for praying for me. Hannah sends hugs and says thank you for praying for her too! joan UPDATE: 8-19-08 I don't think Hannah feels good...secretions are even thicker and were a little yellow tinged yesterday. She had a dentist appt and usually tolerates that well but did not like it at all yesterday. She had a few more seizures too and that usually means something is going on :( she seems a little better today. I know I sound like a broken record but we don't have a nurse so far for tonight, friday. The bad part of that is I have to drive 3 hours in the morning for my Jordan Essential product launch :( Please pray they can find someone even for just a few hours at this last minute! It was a lot easier to work this out when the girls were still home but now with chuck & I in our 50's, it's getting harder LOL thanks joan UPDATE: 8-11-08 Hannah is still having the thick secretions. Even with bigger suction catheters it is still hard to get to them. She is wheezing a little today too. She just finished the antibiotic for the UTI. She has a urology appt sept 4. hopefully we will find out what is going on with her. Thanks for praying for me. I finally saw the GI dr on Thursday and had a barium swallow test on Friday. That did show I have a narrowing of my esophagus which accts for some of my swallowing problems. I have an endoscopy scheduled for 8/21. This weekend I have been in a lot of pain in my upper stomach, right under my ribs. It's hard for me to eat or drink. Please pray for the pain to go away or at least ease up a little. I keep thinking about all the kids and adults I pray for who have severe digestive problems and mine seem so minimal. I know I need to get better quick without any kind of surgery because who else is going to be able to take care of hannah? :) and ny grandaughter is due to arrive in the next few weeks and I don't want to miss that LOL Hannah sends hugs to everyone and thanks for all the continued prayers… joan UPDATE: 8-8-08 As usual, we made it through ok without a nurse friday night...this week is another weird nursing week but so far it is all covered :) Today Hannah has had a few more "little" seizures than usual...not sure why :) While I was typing this, she had another seizure :( Her secretions are very thick again and almost plugging her trach. Please pray for me, I have been having some problems the last couple days with what I think is my hiatal hernia acting up. I called the dr yesterday and so far they haven't called back. Pray I hear from them and that medicine changes will work. thanks joan UPDATE: 8-2-08 We did have a nurse wed night. Patti felt a little better so she came in. Last night was covered and now I am not sure about tonight (friday). Next week it looks like the only opening is wed. thank you so much for prayers about nursing...I wish it was easy enough to take care of hannah ourselves, but we would never sleep :) Please continue to pray for her nurses also. Mary can't work next week because of the big section they had to take out for the melanoma on her hand. got the results back from her urinalysis and the results were the same. We are starting her on an antibiotic but dr K said it would probably just come back. She is getting us an appt with urology. Still having periods where she strains to urinate and just slight temps, not continually though. She did sleep a lot yesterday so we will see how it goes today. thanks again for the prayers...we do feel them joan UPDATE: 7-30-08 Mon We had to repeat Hannah's urinalysis from last week..took that in today. Please pray for 2 of Hannah's nurses. Patti is sick and had to call out for tonight. Mary has had cancer several times and now she has at least 8 melanomas. They are removing them but one doesn't look good and they are going to have to redo it Please pray they can find us a nurse for tonight and we also need one for wed night. As usual, pray for us to get enough sleep if we have to stay up with hannah. thanks Tue We are waiting for a nurse to come in. At first they couldn't find one but at the last minute Stephanie said she would work. She just got her. We still don't have anyone scheduled for wed night. Please continue to pray for that. The nurse mary called and said they had to take a large section out of her hand and had to use skin from her arm to fix it. But, now she can't work her 2 nights next week. I will ask the other nurses when I see them about next week... thanks joan UPDATE: 7-24-08 I took Hannah to the GI dr on Thurs. She also did not like the weight gain and decreased her feeds again. She now gets one can of ensure during the day and one can at night. I showed her the bloodwork we had done and she was concerned about her Blood Urea Nitrogen (BUN) level. http://www.rnceus.com/renal/renalbun.html She is concerned that Hannah is either not getting enough protein or water. Reducing the ensure also reduces the protein. We are going to do a urinalysis on her to check out the levels more. We may have to add some protein powder (which also adds more calories :( ) so, there is a fine line with what to add, just like the fine line between her gaining and losing weight. After the urinalysis we are going to contact the urologist about her straining to void sometimes. Not sure what is going on there. Seizures are about the same and some of them are a little more intense. thank you for the continued prayers. joan UPDATE: 7-12-08 I had a dr appt this morning so while I had Hannah with me I took her to her drs office to get her weight. She weighed 35lb 10oz! That was a 2 lb increase in a month. I am going to call the GI dr on monday to reduce her feeding a little more, that's too much weight for her to gain. She did bloodwork while we were there since she has been having a few more seizures this week but all the labs looked good so that is a Praise \o/ The new nurse worked out great and she said she would love to come back anytime. The nurse tonight is coming in late, her daughter is in labor and they were having to do a Csection. Pray for them... thanks joan July 11, 2008 My baby is officially a teenager! Hannah wasn't born til almost 7pm :) It's thanks to the Lord and her prayer warriors like you that have gotten her where she is...Praise the Lord \o/ We didn't have a nurse last night and so far they haven't found one for thurs night. Pray that they find one, 2 nights in one week is a lot. Her knee did get better finally but it has been doing that a lot lately. I need to mention it to her dr again. It looks like it hurts her more now than it used to.... thank you again for all your continued prayers and birthday cards and wishes! joan Thursday, July 10, 2008 8:20 PM They finally found Hannah a nurse late today. She is actually the sister law of a friend from church...it's a small world. She has been working in a drs office so she needed a refresher in a lot of hannah's things. She is a little nervous so please pray that she does ok...I know she will be fine and can always wake us up for a problem...that's better than not getting sleep :) Her nurse patti is doing good from her surgery and thanks everyone for their prayers. She is supposed to come back to work next week, so we are praying that's not too soon for her. thanks again for all the prayers...Hannah sends hugs and thank you's to everyone... joan Wednesday, July 9, 2008 Hannah has problems with her knees and hips sometimes popping out of socket. right now her right knee seems to be stuck and so far I can't get it back in place....please pray that it pops back in so I don't have to take her out to the dr today. They were not able to find a nurse for Hannah tonight so chuck and I will have to take turns staying up with her. Pray for for our sleep to be multiplied. He has to drive 1 1/2 hours to work everyday and I have to be awake for hannah during the day... thanks Joan July 8, 2008 Hannah's seizures have been a little better since the last message. But, now she is having really thick secretions and has been really close to having her trach plugged. Hannah has a different trach tie on (to hold the trach in) and now has a bad yeast infection around her neck....looks miserable :( Tonight, (tues) and Thurs night, there is not a nurse scheduled so far. Please pray they can juggle schedules around and at least fill part of it... As always thank you so much for the continued prayers for us...we feel those prayers especially at the times we really need it \o/ joan UPDATE: 7-7-08 Yesterday and today Hannah has been having quite a few more of the short quick seizures and several longer ones. This is an increase of lately so not sure what is going on...she is sleeping a lot today too....I hope she isn't gettting sick for her birthday. Joan UPDATE: 7-3-08 Hannah and I want to wish everyone a blessed 4th of July weekend...only6 more days and my baby will be 13yo!!! It's amazing how far she has come in 13 years. I just realized I never sent a message to pray for my family while I went to my Jordan Essentials convention...I was back home again on the 22nd and everyone made out fine. I learned a lot and had a great time but knew I was missing all 3 of my girls together....jenn & bob came home to help with Hannah and had to leave before I came home... Hannah has been about the same with her seizures and sleeping. Today it's sounds like her secretions are so thick, she may be getting a plug in her trach. I am giving her some extra saline breathing treatments just to be safe, although most of the time that doesn't seem to help. Of course, don't all kids do that the day before a holiday? LOL Please pray for hannah's nurse patti, she is having surgery next week...and pray that they can find a replacement for her here while she is out... I also need to update pics on her caring bridge page, the welcome picture is from becky's wedding over a year ago...Hannah is losing her 'little girl' look and starting to look more like a teen (except for her small size) thank you so much for the continued prayers for Hannah and our family...every year as she gets older, things seem to get a little tougher...becky is doing good with her pregnancy except for swelling in her feet...the dr is keeping an eye on it...so our grandaughter should be her in less than 2 months now... joan UPDATE: 6-12-08 The agency wasn't able to find a replacement, but Patti just called and said she is feeling better so she will be here...please pray that she continues to feel better...thanks for the quick prayers...Praise the Lord for the quick answer! other than that, Hannah has been about the same. Usually when I forget to update not much has changed, just the usual everyday challenges. the hot humid weather really affects her a lot though... Pray for our older daughter becky, she is 27 weeks pregnant and is measuring 4 weeks more than she should be. She has to go for another ultrasound on the 17th. She did the 1 hour glucose tolerance test of friday (for gestational diabetes). Could be a couple different things. Thanks for the prayers joan UPDATE: 6-8-08 Hannah's nurse had to call out for tonight (Sunday) Please pray for her and that they can find a replacement. It's hard for chuck when he has to go to work the next day...thanks joan UPDATE: 5-9-08 Hannah recovered from her last wheezing episode with the prednisone. Last night, thurs, she started wheezing again. She still doesn't sound real good this morning. The pollen here is really bad...guess I should be thankful for the rain today :) Please pray I can clear her up without a trip to the dr. my nephew is getting married on sat and hannah is not going to the wedding. she will be here with patti (who finally got over her migraine, thanks) we are going to try to see my sister pam today from FL so pray she stays well...thanks joan UPDATE: 4-30-08 Please pray for hannah's nurse patti...she had to call out tonight because she has a migraine...and pray for chuck and I since they couldn't find a replacement...we are going to take turns staying up with her... she had a lot of seizures last night (monday) but today has been better...thanks joan UPDATE: 4-20-08 Praise the Lord....Hannah is much better...the prednisone opened her up really good...the nice spring weather is playing havoc with a lot of allergies around here...it has been beautiful here the last few days... thank you so much for all the prayers. joan UPDATE: 4-16-08 What a night! Hannah has not been herself the last couple of days....last night when I put her in bed at 9:00 she was very tight and wheezy...I noticed her belly was breathing not her lungs...and her breath rate was very high...I gave her the neb she gets at 9:00 and she still had the problem so I gave her the 11:00 dose of xopenex at 9:30 and again at 10:30...her nurse didn't come in until 11:00. I had a call into her pulmonologist to see what we needed to do...I waited an hour and still no call...our internet (verizon) was down and so were the phones and cell phones. I could call out on my cell phone but not receive any calls...so the 3rd time I waited til the could get her dr on the phone...he told us to give her a major dose of predinsone and to do extra breathing treatments. We had the prednisone here from feb when she had RSV and we didn't need it...thank you Lord! I finally got to be around 12:30 and didnt sleep well...this morning, thanks to nurse patti, she has clear breath sounds and is a little better...she is running a temp and her heart rate is up. Her breathing is still fast for her. She seems to be afraid to sleep or just can't. I had a scare earlier in the day with her seizures. when I turned her in her bed at 3pm I had just given her seizure med to her and the extension came off her gtube and everything went all over the bed...so I assume all of her medicine :( she had a very intense seizure around 5:00. It felt like it went on forever. so far, the day is a little better than yesterday. Nurse Patti was her til 11am. I am not waiting for the dr to call me back. so, right now we have no idea what is going on with her....I will put her back in bed at 1pm and give her meds and neb and hope she will sleep a little...I will recheck her temp then too... Please pray for the wheezing...she very rarely has wheezing mainly because she gets so many neb treatments over 24 hours, even at night... and pray she is not getting sick. I just told jenn (our middle daughter) that maybe Hannah was feeling left out...we found out last week that becky & todd are having a baby GIRL in Sept and jenn & bob bought a house and settled on it today!! I told her she doesn't have to do all this to get extra attention...she gets it anyway :) joan UPDATE: 4-5-08 I guess I need to clarify my last update. We did not start her on the felbatol yet, I still haven't felt a peace about using it. The change we made was to increase back the gabitril that we had been decreasing. The last couple days she has been having quite a few "quicky" seizures. I hope it's just adjusting to another change in the gabi again. It seems she has most of them when she is sleeping and it wakes her up. joan UPDATE: 4-2-08 Hannah has an appt with neurology on Tuesday. Pray that I can tell the drs what is going on with the seizures and they understand J I think she may need an EEG since it appears she is having different seizures and we are not sure. We are scheduled for another decrease in her seizure med in a couple days but I am not sure we should do that. She has been having a few more seizures the last couple days and finally slept more last night than the past few days. I don't like it when she can't seem to sleep comfortably. She just seems so miserable. I do sleep thanks the her nurses being here. She has been having very thick secretions too…I am hoping it is due to the weather since it is so unpredictable. When they are thick like this, she is more prone to getting trach plugs. She is still going longer periods without a wet diaper. Her dr is wondering if she needs to see urology again. When she does finally go, she soaks her diapers. Nursing is getting a little better. Hannah has 12 hours of nursing every night but on 2 days she gets an extra 4 hours for me to go to my appts. Patti is giving up her extra 4 hours so mary can work her 32 hours. But it keeps a 12 hour shift on tuesdays. That still leaves every other tues night open and still every other Friday. This past Friday we had a new nurse and she only worked midnight to 8am. We really liked her but she does work other cases. Thanks again for the continued prayers for Hannah and our family. It is so hard to have to deal with a lot of her issues especially nursing…but it's one of those things we have to continue to “endure”. Wednesday: Hannah saw the neurologist tuesday. Nothing new there, just that we can add the felbatol if we want since that is the only other medicine she has not been on. That is the one with a few major side effects. From what I told them about all that has been going on we decided to stop the decrease in the medicine and slowly increase it back just a little. She was on 2 pills 3 times a day when we started the wean...we are going to stop it at 1 pill 3 times a day. I am comfortable with that decision. They said a EEG wouldn't do any good since there is nothing else they can do if she is showing other seizures :( Pray for our nursing next week, right now we don't have a nurse scheduled for 3 different nights. Pray that they find somone or can move them around a little... thanks joan UPDATE: 3-19-08 Nursing issues again :( the nurse that has to cut back her hours wants to work 2 -16 hour shifts and leave an 8 hour shift for another nurse. Hannah's plan of care says 12 hours per night . I asked her about it and she said that chuck told her it was ok in feb. I realized after she left what she meant...it was for the shift on my birthday and he told her she could work only 8 hours if she wanted...we don't mind once in a while but she thought he meant all the time. If we have an 8 hour shift every week then medical assistance may think we can do that every night :( besides it being hard on our "older" bodies :) Other nurses don't want to work just an 8 hour shift either. She said if she can't work like she wants she will have to quit! We don't want that either...she will be in tonight (Sunday) early. I fear a confrontation but I think that is going to happen. Chuck has a call into the main guy at the agency but he has been out of town. Please pray for the Lord's will in this...she has been our main nurse for a few years and it's her Social Security that is messing things up. We had a new nurse start thurs and fri night...she was planning on working the every other fri shift but her sister is dying in Korea and she has to leave Monday to go there and take her nephew. She will be gone for a month :( SHe also couldn't find her passport when she was here fri, so I told her I would pray she found it. Please pray for her and her family... Hannah has been having a few times this week where she is going over a long time without a wet diaper. The nurse even had to use a catheter on her since it had been over 8 hours...this is unusual for her...we did a culture but it was negative...we normally change a diaper every 2 hours even overnight (with overnight feeds). thanks joan UPDATE: 3-12-08 I took Hannah back to the dentist today to have 2 of her baby teeth 'wiggled' out. He is hoping that this will make room for some of her permanent teeth to move around. Her mouth has too many teeth. She did well with it even though she did not like the shots :( we met the most wonderful little girl today at the hospital. Her name is Savannah. I gave her one of Hannah's prayer cards I made. (the prayer cards are business cards with her CB page on it and says thank you for praying for me) It was such a God thing...I gave her the card and she had already prayed for Hannah before she met her! She had seen her while we were eating lunch in the cafeteria. Thank you Savannah! She is having some problems with her trach, at least we think that's what it is...she is having problems coughing and it sounds funny. please pray for us to find a mini van that is wheelchair ready. We have our old van with the lift in it and also the one chuck bought to replace that. He is having trouble switching the lifts, there is something odd about the floor. We also make payments on a sable that I drive. It would be so much easier and better for us to be able to combine all 3 vehicles and just have 1 that I can drive all the time...seems like the mini vans are a lot more expensive than the full size vans...but with the price of gas, it's getting expensive to drive it...it's 2 hours to the hospital for all her specialists. I only drive it when she is with me so that is why I have the car...but insurance is high on that many cars. The Lord provided the van we drive now at a good price. So please pray that we find one that we can afford...thanks joan UPDATE: 2-29-08 Hannah's bloodwork was normal. Everything looked good. But she is still not feeling well. I guess it's just the same "viral" bug that keeps lingering with everyone else. I November we changed her formula to ensure and increased the amount. She weighed 28 lbs. Last week she weighed 33 lbs. She is getting way too heavy. I have a call in to the GI dr about reducing the formula. I called a couple days ago but didn't hear back so I just called again. Pray she calls back today. Nursing is still in a waiting stage. Patti picked up every other tues night so that still leaves every other tues night open. the nurse that worked the friday night two weeks ago is coming back tonight. They changed her schedule around at her other job. Not sure if that is just for tonight or permanent. i want to say how much I appreciate Hannah's nurses. Especially Patti. She took vacation days from her other job to be here for Hannah while I was in FL. She goes out of her way to make things easier for us. It is so hard to have nurses in your house all the time but we know we couldn't take care of Hannah without them. Thanks for the continued prayers joan UPDATE: 2-25-08 WOW, I just realized how long since I updated...sorry :( Hannah has still been having slight fevers and not feeling well. We are not sure if it's just the RSV hanging on or what. I did take her to the pediatrician on thurs. She drew blood and did an ear culture. She ran a quick flu test and it was negative. She has a really bad yeast infection around her trach site. It has been bright red from all the drainage (leak) from her site. We started her on diflucan and a cream on friday and it is much better looking today. She is still not sleeping good and then after a few days she 'crashes' and sleeps soundly for hours. That's almost a new 'normal' for her. The neuro told me that is not unusual for someone with her brain development. Seizures are about the same. Her trach also has some smelly secretions. Pray that doesn't require antibitics, we try to avoid them if possible. I had a great time in FL with my mom, sister pam and her friend Pam. Hannah made out fine and her daddy only had her alone sat and sunday. The weather was beautiful and I had a nice relaxing time....thanks to the 'pams' for taking such good care and spoiling me. I also had a nice 50th birthday. Got to spend time with all 3 of our girls, jenn came home for the weekend...hannah and I miss not having them around... as always, thank you for the continued prayers joan UPDATE: 1-30-08 I guess I should have said hannah is a lot better with the RSV...she never got really bad this time, thank the Lord. I do have to say when she doesn't sleep at night, I am so thankful for her nurses. I just found out today although I suspected it that her main nurse has to cut back her hours because of social security. She works 2 -12 hour shifts and 1 -16 hour shift plus she is filling every other friday. So now, she has to cut back to 32 hours or less....please pray that they can find a nurse to fill those hours....they say that they have been working on the every other friday night for over a year....but I never know what to believe from them. We are stuck in that no other agency takes pedicatric medical assistance patients. If you know of any nurses in our area that are interested....thanks joan Hannah has been doing a little better with the RSV. Secretions were better but in the last couple days they are really thick again. We did another wean on one of her seizure meds...the seizures she was having are better with the reductions but there is other activity that she does that we aren't sure if it is seizures. She will jerk awake and then back to sleep again...sometimes constantly! Can't be a restful sleep. Sometimes, she just sits there staring like she is asleep with her eyes open, nothing moving. She will be awake for hours, even at night and then crash, nothing can wake her up. Please pray that we know what is seizures and what is related to weaning off the medicine. I am leaving on the 6th, next wednesday to go to FL with my mom...we are going to see my sister Pam...can't wait! Will fly back home on Monday the 11th. Please pray for everything here at home. Her nurses and caregiver are doing extra hours so chuck can go to work. He will be alone with her over the weekend and when the nurses come in late. Please pray that the respite hours work out. I can't call to get them approved until Feb1. I am so thankful that they are doing this for me. I really need the break :) Last week I had some medicine changes for me and they weren't good. I just started a new med, please pray it works without side effects. I also had 2 moles removed from my back. Please pray they don't get infected, I have sensitive skin like Hannah :) thank you so much for the continued prayers for us. joan UPDATE: 1-9-08 I took hannah to the dr today. She has RSV! http://www.rsvinfo.com/ http://www.kidshealth.org/parent/infections/lung/rsv.html We were very surprised. She had this before when she was 9 yo I think...it is usually in infants, kids under 3 and those who are compromised medically. We also did bloodwork and since she has seen so much RSV she did the quick test. That explains a lot of the temps, irritability, etc. In most of us RSV is just a cold. It can be very serious. That is what our friend Joel had that made him very sick but he has no immunity. Since it is a virus, we just treat the symptoms. Pray that it doesn't get worse. thanks again for all the prayers for us...I am feeling much better today. Got to do my Bible reading and praying that I have been neglecting lately :( UPDATE: 1-7-08 We had a nice Christmas and New Year. Hannah has still not been feeling well. It's off and on and nothing we can put a finger on. We did decrease her seizure med again at the end of Dec. It's hard to tell if it's the seizure med or if she is still sick. Sometimes it would be nice if she could tell us :( She is just not herself... We did find out for Christmas that Hannah is going to be an aunt probably in Aug or Sept! Our oldest daughter Becky and her husband Todd are going to make us grandparents \0/ everyone thinks aunt hannah sounds funny. She will be 13yo and a teenager by then. I find myself getting stressed a lot lately. It's time for me to go on vacation :) My mom and I need to get tickets to go to FL in Feb to see my sister pam. We have to arrange respite care for Hannah and the funds to pay for it...please pray for that too. Some days it is hard to keep up with all Hannah's needs. There are so many other kids out there that have cancer and other things that I pray for, and that makes me thankful for her. but, having a child with all the needs Hannah has is very stressful on our whole family. It' is wonderful that she has nurses that can take care of her while we sleep but even that is very stressful. They never do things the same way that we do and we are always arranging our lives and schudules around when they can work. Please pray for us as we deal with all this. Finding time for Chuck and I as a couple is hard. I asked prayer for that a while back and think everyone misunderstood. We have places we can go to it's just trying to get someone to come in and take care of hannah 24/7 even just for a weekend. She requires someone with her all the time. It's hard to explain all that. I know that she knows we love her and are thankful for her but I guess unless you have been around us much, it doesn't make sense. I am only telling you this so you can pray for us. Sometimes it makes it worse when people are always telling me that we take good care of her, etc. But, I don't think we will know until we get to heaven why Hannah was born the way she is...I don't even understand it myself. I am not looking for sympathy and didn't mean to be so long writing this but know it is from my heart...please just pray for us and hannah...sorry for all the rambling :( well, I guess I just showed my need to get away. thanks joan UPDATE: 1-5-08 It's 4:45 on friday and so far we are not going to have a nurse tonight. Please pray for them to find one or for us to get enough sleep...He always provides! Hannah has not been feeling well...not sure what is going on...she is just not herself...slight fevers but not all the time...not sleeping at times and then sleeping soundly...hard to put a finger on it... UPDATE: 12-24-07 Hannah had been feeling better and no fevers from her ear infection. Today she has not been herself and when we got home from church her temp was 100.3! I told her it's only 2 days til Christmas and she needs to behave :) Not sure what is going on with her....thanks so much for all the prayers for us and her friends who are sick. Merry Christmas from Hannah Grace \o/ UPDATE: 12-20-07 I took Hannah to the dr yesterday. She has an ear infection and sinus infection. If we go anywhere near her ear she cries and she never cries. She is still running a fever over 100 today even with the antibiotic and drops. Her lungs sounded kinda junky when we were in there too. Pray the antibiotic helps with all that. I haven't checked her temp since around 1:00 because she has been asleep. Please continue to pray for joel, he is doing a little better but still critical. thanks joan UPDATE: 12-17-07 Hannah seems to have a sinus and ear infection. She is running a fever of 100. She is also a little constipated. She has been having a few more seizures and just not feeling well. We all know how things go with Christmas coming. Thankfully, I think I am finished shopping, just need to wrap and get a few things done around here. joan UPDATE: 12-12-07 Hannah has been running a fever all day. She is sleeping a lot and looks like she doesn't feel well...not sure what is brewing with her...she hasn't been like this for a while... joan UPDATE: 12-7-07 wow, I didn't realize how long since I updated.  Hannah has still been having really thick secretions...almost plugging her trach lately.  She doesn't really want to cough either.  She has been having fewer seizures, but in the last week or so they are a little longer.  she sometimes acts like she is not feeling well.  The last couple days she is sleeping more than usual.    Saturday, I am doing a craft show for my jordan essentials business.   It's in another town and is from 9 til 3.  Chuck will be with hannah for the day.   Pray for them as usual :)  daddy is not always sure of things :)   He also has to get a covered dish ready for a dinner we are going to saturday night.   we saw the GI dr last week.  She is going to be starting ensure instead of pediasure as soon as we get it.  She is outgrowing pediasure and needs more.  Pray she tolerates that.  She also needs to gain just a little weight.  Only because her tail bone is very pronounced and looks painful to me :(   thanks again for the prayers. We feel each one and the encouraging words. joan  UPDATE: 11-08-07 Please pray for Hannah's nurse, Mary.  She was sick  today when she left and had to call out for tonight.  So far, they aren't able to find anyone...chuck has to work tomorrow...please pray she gets better and pray for us as we try to stay awake with her all night...she has been sleeping all day and most of yesterday and last night.   She does that a lot...pray that she also sleeps for us, it makes it easier since she stays in bed for her feeding... joan ------------------------------ Please pray for Hannah's nurse, Mary. She was sick today when she left and had to call out for tonight. So far, they aren't able to find anyone...chuck has to work tomorrow...please pray she gets better and pray for us as we try to stay awake with her all night...she has been sleeping all day and most of yesterday and last night. She does that a lot...pray that she also sleeps for us, it makes it easier since she stays in bed for her feeding... joan UPDATE: 11-2-07 Hannah has been having an extra lot of secretions the last couple days...not sure if it's this crazy weather or what.    I am leaving early friday morning and am taking my mom to visit my daughter jenn in VA.  Hannah is staying home with her daddy and nurses.  Please pray that she behaves while I am gone. Chuck is good about helping but he also needs to work some while they are alone.  Please pray that he doesn't have any problems.  It's been too long since I have been to see her...and pray for safe travel for us...thanks joan UPDATE: 10-24-07 I am not sure but I think I gave Hannah her 3pm medicine at 1pm instead of that :) since I am not positive which I gave her (bad mom :) I just gave her 1/2 dose at 3pm. Please pray for no extra seizures from it...I just feel bad that I must not have been paying attention :( She seems to be fine and isn't sleeping a lot extra. We are having a lot of trouble with some things in Hannah's van :) we found one the same year (97) that only needs a few things done to it. We are praying about buying that instead and selling this one. It should be more reliable. We will have to put the lift in the new one too....not sure what that will take. Please pray for the right decision. As usual, Hannah is about the same...never know what she is going to do from day to day...people get tired of us saying she is being hannah but it's hard to say some days. Thanks for the prayers for Hannah and for us. Some days it is harder than others to be her parents. chuck is going to go with his parents to FL the week before thanksgiving so pray for all of us. I can't go, it's too much to get someone to take care of her during the day. I am hoping to go with my mom in Feb. to Fl to visit my sister. pray we can also find time to get away together at least for a weekend. thanks. Please pray for me for my job. joan UPDATE: 10-10-07 Hannah's sinus infection seemed to be improved.   She is back to having a lot of secretions again though...both from her trach and nose/mouth.   I am hoping that is because of the weather changing...after all this summer like weather it looks like we might finally have a taste of fall...seems like here in MD we go from summer to winter and back again  :)   She has still been having the quick seizures.  Since Monday night she has been sleeping  almost constantly.  I have been able to get her up in her chair a few times but she always falls back to sleep again. Not sure how much of it is related to her seizures or the decrease in the medicine.  I don't know when we should stop this wean of her gabitril.  It's hard to know when you aren't sure what is a seizure and what is not. Or if it is related to any of the extra sleeping or not :(   She sometimes sleeps like this when she is getting sick...pray that is not why :)   We have a few kids that we pray for on the caring bridge pages.  A few of them have gone to be with Jesus in the last couple weeks...please pray for their families.  we also pray for a couple kids that are not doing well right now...please pray for them too...   we updated her caring bridge page.   She now has a soccer background...it looks like her cousin Haleigh's team colors, so this is for haleigh!   Thank you for the continued prayers for hannah and our family. UPDATE: 9-14-07 I took Hannah to the pediatrician today. She has a sinus infection, her ears have a lot of fluid in them and She heard some wheezing...lungs sound a little coarse too. She prescrived an antibiotic for the sinus infection. She suggested we keep her home this weekend which I was probably going to do anyway :) She has tons of secretions. Hopefully it's just the weather changing affecting her sinuses. She is still running a slight temp. Thanks for the continued prayers joan UPDATE: 9-11-07 Today's update: Hannah's "quick" seizures are much better...she is still not feeling good. The nurse said she had an ok night...today, she is just kind of "out of it". She gets like that once in a while...I woke up this morning with a lot of sinus pressure in my head from the weather...makes me wonder if her head hurts like that too....sometimes it would be nice if she could tell us what is wrong :) thanks again for all the continued prayers joan ------------------------------ Hannah has been having a lot of quick seizures today...she is also not feeling well...running a slight temp and just generally not herself. I am hoping that is what is causing the seizures. It seems like everyone around here is having troubles with allergies or a cold. She hasn't been sleeping well either. thanks for the continued prayers joan UPDATE: 8-10-07 Hannah still acts like she is not feeling good.  She is sleeping off and on.   It's hard to tell if she is having some small quick seizures or if it's just because she is not feeling good.   Her bms and gas appear to bother her and she isnt as tolerant of some of the things she usually is.    I am not sure if some of it is from the decrease in her one seizure med.  It's been 2 weeks so that makes it hard to tell.  Pray that we have clear direction on the seizures. I don't know if I should keep the decrease or put it back to the other dose.  We decreased it to see if it was causing more seizures or not.     Pray that we find out why she isn't feeling good.   I am hoping all of it is due to the very hot HUMID weather we are having.  She has only been to the dentist this week and the rest she has been home.   I am going to a new product launch tomorrow, saturday a couple hours from home.  Hannah is staying home with her daddy and her sister Jenn is here from VA.   It's hard for me to leave her when she isn't feeling well but I normally don't worry about her once I am gone....she is in good hands.  Please pray for me, I have a small part in a presentation tomorrow and it is out of my comfort zone  :)   Thanks for the continued prayers for hannah and our family...we feel them \o/   joan UPDATE: 7-20-07 Hannah has 2 really loose teeth that are ready to come out. They seem to be causing her a lot of pain. Hopefully they will come out soon. Nothing she does is easy for her, even teething . She has appts next week with neurology and pulmonology. I want to talk to the neuro about making some med changes, I don't know how or what...she is on the top dose of all her meds and has been on everything else there is but the felbatol. when we increase 2 of her meds she has more seizures and we have to decrease them...so I want to know what these meds are doing to her all the time...are they helping or hurting? Pray for wisdom for the drs and for us especially with the seizures. It's easy to ask for prayer for Hannah but not for us. However this really involves the princess. Please pray that we can find the time (and money:) to make some important improvements to our house, especially the bathroom and H's room. We only have 1 bathroom and there is a lot of mold damage in there. But, it's hard to do the work the right way when we still have to use that 1 bathroom :) And, Hannah is in her room LOL chuck tries but just never gets to it... Chuck is working a lot of extra time and when he is home he is tired. He drives 1 1/2 hrs each way to work. then when he is home he still has to do more work. I know he is frustrated tryng to keep up with everything, but he doesn't complain. He is such a loving husband and father and works really hard to provide for us. Pray for his protection as he tries to get it all done. We celebrated our 30th anniversary in June. I thank the Lord everyday for my wonderful husband. I am very blessed to have him and our 3 daughters! and our 2 son in laws, hannah's brothers. UPDATE: 7-7-07 Hannah's 12th birthday is in 2 days! When she was born, the drs didn't expect her to live very long. I think they would be shocked and pleased that she has gotten this far! EEk, and next year she will be a teenager! Attitude and puberty are the only age appropriate things she does Nursing is about the same..we made it through patti's vacation. Last night, friday, we didn't have a nurse. They did find us one for last sunday night. It's hard having a new nurse here but at least we can sleep. They are still working on every other friday night. For the month of August, Mary will be only working 2 nights instead of 3...so pray they can work this out too. She really needs this time off...and pray for her grandaughters has they travel here from Germany. Seizures are about the same. The drooling is worse. I did take her for an emergency appt with the dentist last week. He pulled the tooth that had broke off. He said that should help her pain but it really hasn't. She does have her 6month dental appt on 8/8. joan UPDATE: 6-23-07 Thank you for the prayers for the wedding and hannah. The weather was perfect and Hannah was the perfect princess maid of honor :) She is doing about the same with the seizures. It seems that the increase in the seizure med klonopin could be the cause of the extra secretions. She is constantly drooling and we have to change the gauze under her trach about every 2 hours :) Keeping her hands in her mouth doesn't help it either. She seems to have a lot of pain in her mouth from her permanent teeth pushing on her baby teeth. Today she has been asleep a lot and her heart rate is dropping below 50 a lot. I am still not convinced that this isn't seizure activity. The neuro said that the heart rate usually goes up with a seizure, but Hannah never does anyhing like it's supposed to be done :) Please continue to pray for our nursing situation. They haven't found anyone to fill in the friday nights or these couple weeks that one nurse is on vacation. Mary is working 6 12 hour shifts for us this week...please pray for her tonight and all next week, when she is repeating it...she will only have Sat night off.... thanks joan UPDATE: 6-11-07 Hannah has been sleeping a lot more than usual the last few days. We aren't sure why but it appears she may be having seizures that are different. If these are seizures, she is having a lot of them. I will watch her and call the neuro if it doesn't improve. Becky's wedding is next Sat., only 1 week away. Hannah's caregiver is going to come and stay with her during the wedding and while we are at the reception until her nurse comes in.... joan UPDATE: 5-31-07 Hannah started having more seizures again over the weekend. She is having at least 8-10 a day. She has been sleeping a lot too and that is understandable...so far, we haven't figured a trigger but Hannah always has to do things differently to keep us on our toes thanks again for all your prayers...we do feel them . UPDATE: 5-25-07 Hannah continues the laughing but it is not as bad as last weekend. You can't help but laugh with her though :) The seizures had been a lot less since that last increase of her medicine. But, in the last couple days she is back to the same amount as before. There are not many meds out there to try for hannah. She has been on every seizure med or variation of it except for felbabtol and the neuro still isn't sure that he wants to try that with her. That is why it's hard to know what to do each time. She is already on 4 medicines right now. Our oldest daughter Becky is getting married in a couple weeks. It's not a big wedding but it's going to be here...please pray that I can find someone to take care of hannah for the wedding so I can be Becky's mom for the day. Hannah is the maid of honor so she is “in the wedding”. I just want to not have to worry about hannah then too....I was able to do that when jenn got married 3 years ago thanks to Hannah's special ed teacher. We are still having problems with nursing every other friday. He regular nurse is helping out a lot but she would really rather not. do it all the time. I don't think the agency is working real hard to fill it...there is a nursing shortage too and we are an hour away from the agency. thanks so much for the continued prayers for us. joan UPDATE: 5-21-07 chuck and I had a nice relaxing time while we were gone. Hannah and Becky did well. This is going to sound like a strange request. Hannah has been laughing hysterically almost constantly. It's not appropriate at all....she will stop for a few minutes and just lay there...then she starts laughing again. She isn't even sleeping. I do love it when she smiles and laughs but this is just not normal. Please pray that we can figure out if there is a problem. It is driving us nuts setting off her vent alarms... thanks joan Hannah finally fell asleep last night when she got her meds and then slept straight through everything til late this morning. She seems to be more back to herself now...the laughing has stopped. I don't know whether it was just because she was too tired or what the problem was...thanks for praying. BTW, I accidently put and i in chuck's name the last update...sorry, I guess I didn;t double check it. joan UPDATE: 5-15-07 We increased one of Hannah's seizure meds 2 weeks ago...seizures slowed a little...but it is making her very tired and she is sleeping a lot... Chuck and I are leaving tonight to go to the beach for a couple days...the nurses will be here at night and our oldest daughter becky will be here with her during the day. Please pray things go smoothly while we are gone. So far, today the electricity to the computer shut off and then the sump pump in the basement stopped working :( This is the first time we have been away for over a year...a well needed rest :) thanks again for the continued prayers for Hannah and our family... joan UPDATE: 5-3-07 Please pray for Hannah. She has been having some problems respiratory wise...not sure how to describe it...she has not been her usual self. She just had two very long seizures, one lasting over 90 seconds :( I don't know if it's all from seizures or if she is getting sick. If it's seizures, then they are different than usual....the last 2 were her “normal” ones. Please pray for wisdom for us... joan UPDATE: 4-26-07 Hannah saw the cardiologist yesterday.  They did an EKG and Echo of her heart.  Everything is normal with her heart!   He says the low heart rate is ok as long as it is just deep sleep.  He agreed it's possible that it could be seizures, although normally a heartrate goes up with a seizure.   Praise the Lord! thanks joan UPDATE: 4-24-07 HannahGrace has her first appt with a cardiologist Wednesday morning.   Her heart rate has been dropping below 50 when she is sleeping sometimes.  Other times it is very high...her dr doesn't think it's a problem but the neurologist thought we should get it checked out.  They are doing an EKG.  Her nurse reminded me to tell him about her ice cold feet all the time too.   She has been doing about the same with her seizures, sleeping etc.  Everyday is an adventure with her joan UPDATE: 4-13-07 Hannah had an appt with the wheelchair clinic on Tuesday. It was a very productive appt. Her headrest needed to be adjusted because she was constantly leaning her head back. She also needed the supports under her arms moved up. Now, she is getting a whole new seating system that will fit her much better, what she uses now she sits on top of the cushion instead of being comfortable...she is getting a much bigger and softer headrest too. I hope these changes will make her more comfortable. We have to wait for medical assistance to approve them and then wait for them to be ordered :) We also saw the pulmonologist. He will do a bronchoscopy when we go back to see why she has a leak around her trach and has been decannulating herself lately...she is already in a 5.5 trach and the next size is an adult 6.0 He just wants to leave her treatments like they are for now. In the last couple days she is back to a few more intense seizures. She does have 2 loose teeth that are being pushed out by her permanent teeth, so it could be the pain...we never know...and she never tells us LOL joan UPDATE: 4-3-07 I took Hannah to her pediatrician this afternoon....she said she was wheezing but not tight...she prescribed prednisone for her. We have her medical assistance 6 month review meeting at her office tomorrow at noon. She will listen to her again and see if she is better. Please pray for this meeting too...there is always the chance that she could lose some of her nursing hours if medical assistance thinks she is stable or no longer needs as many hours... thanks again... joan UPDATE: 4-2-07 Hannah has been wheezing through the night and today. That is unusual for her. We are doing extra breathing treatments. I am not sure if it's the weather or she is getting sick, thanks joan UPDATE: 3-29-07 It seems like the increase in Hannah's gabitril is not helping her seizures at all. It seems to be making things worse. She has been having episodes in the morning about 2 hours after the increase where she just shakes oddly. It will last for an hour or more and appears to be a seizure. She also had a longer seizure last night that scared the nurse...75 seconds and stopped breathing for 20 seconds she said. She is also not sleeping a lot but just lays there staring. I am waiting for a call back from the neurologist about this and the results of her bloodwork from last week. I have to share a cute story with you. Last week when I took Hannah to the orthopedist we were eating lunch and a little girl wanted to say hi to hannah in her wheelchair. She was cute, about 2 or 3 yo and had a little tiara in her hair. I told her that was Hannah and she said she was Olivia. She "talked" to Hannah for a few minutes, then went back to eating. her mom told me that she has an uncle in a wheelchair so she is used to it. When they were leaving, she came over and gave hannah her tiara! It was just so sweet. Most children and adults are uncomfortable around people who use wheelchairs. I realized after this that I had no way to thank her and others who ask about Hannah and pray for her. So, I made up little prayer cards that have the caring bridge address on it and asks them to sign the guestbook. Now, when someone asks, I can give them the card. We are still having issues with nursing for every other friday night. It's a long story but please pray for the nursing too. It's so hard on us when we have to stay up and watch hannah at night. I am so thankful for the nurses that she does have. As always we thank you so much for all the prayers for Hannah and our family. Joan UPDATE: 3-24-07 Hannah Grace  3/24/07    11am   We had a pretty good day at Hannah's apts yesterday.  We got there just early enough to get her bloodwork done before...there is usually a really big wait but there wasn't anyone in front of us...first stick, got all the blood they needed...Praise the Lord!   then we checked in and found that she needed an xray for her scoliosis.  there wasn't a wait there either.  The orthopedist said her curve is only 37%  and a year ago was around 34%.  We don't need to do anything about it yet except make some changes to her wheelchair seating.  We already have an appt for that in April.   He is just amazed at how  much her knees and hips pop...they can move all kinds of directions...he said she is missing either ligaments or tendons in her knee( I can't remember)...I told him the sounds they make  sound awful...he laughed and said he thought the same thing and he is the orthopedic surgeon  LOL   only Hannah would have something like this...it has done it all her life, it's just getting worse sounding as she gets older...it doesn't appear  to cause her pain, she actually laughs when it happens...especially changing her diaper or clothes...that is a job in itself :)    This week she appeared to have swallowed 2 baby teeth.  On Monday the nurse was brushing her teeth and she started bleeding..she looked and saw a hole but no tooth...and then yesterday when we got home, I suctioned her mouth and got blood again...another hole on the other side of her mouth!   I looked all over and couldn't find that one either :)  Does the tooth fairy come if you swallow your tooth?   LOL thanks for the continued prayers joan UPDATE: 3-23-07 We increased Hannah's seizure medicine again yesterday. She seemed to have more seizures yesterday and today. I hope it's not the medicine that is causing it. She hasn't been sleeping much either. Pray that we will know if the medicine is working or hurting. Friday morning, 3/23 she has an appt with the orthopedic dr. While we are there we are going to have her bloodwork redone from 2 weeks ago. She is such a hard stick...please pray that they can get enough blood on the first stick...the blood last time clotted so they couldn't use it..thanks so much for all the prayers UPDATE: 3-17-07 Hannah had some bloodwork done last week when we were at the neurologist. I talked to him today about the results...he said most of it looked good but some of her blood clotted so the results may not be accurate. We are going to repeat it. so, far I haven't seen a difference in the increase of her gabitril for seizures. Continue to pray for the nursing situation. It looks like we are not going to have a nurse tonight. Pray that chuck and I will get the sleep we need and multiply what we do get. We take turns staying up with Hannah, and it gets harder as we get older :) I think we may have a couple openings in the nursing schedule and they are hard to fill. Pray for a dependable nurse to fill the slots. i think dealing with nursing issues is one of the major stresses for us. I don't think I have mentioned this before but Hannah's room is not really working for her especially since she got a bigger hospital bed. It was crowded before but now is bad. the worst thing I am concerned about is the lack of electrical sockets. We added couple extra a few years ago but it's still not enough. We have extension cords on extension cords. I know it's not safe but don't have a way to fix it right now. As always thank you for your prayers joan UPDATE: 3-14-07 Hannah is still doing the same with sleeping and sezures. One of her nurses is having trouble with hours at her other job. She isn't going to be able to work this Friday night...please pray they can find someone. She and another nurse both come here after another job so they come in very late a lot. There is a nursing shortage so please pray they can work out the schedule better...chuck and I are having a hard time with the fluctuating hours but we really like the nurses we have... thanks again for the continued prayers joan UPDATE: 3-10-07 Hannah Grace saw the neurologist on Tuesday. Actually we only saw the nurse practioner instead of the dr...I think I should have insisted on seeing him. As usual they is as stumped as we are :) He increased one of her meds, gabitril. So far, I haven't seen a difference...except it seems she is having more..I know, that doesn't make sense. Pray that this med increase helps or we will know what else to do. The only other medicine for seizures that she hasn't been on is called felbatol. The side effects can be serious with it. Side Effects: The common side effects related to Felbatol® include disturbances of sleep, headache, loss of appetite, weight loss, nausea, vomiting, and constipation. Because there can be serious side effects related to the bone marrow and liver, you may be asked by your physician to sign a consent form to take Felbatol®. These side effects are uncommon, but occur more commonly in those taking Felbatol® than in the general population. please pray for wisdom in making the right decision about her meds, especially the felbatol. Every day is different with Hannah. some days are better than others but most of the time she just seems kind of “out of it” I know that has a lot to do with her meds...she continues to take 4 seizure meds! Her secretions are still very thick...a lot to do with the cold dry weather, we think. thanks again for the continued prayers for our family. joan UPDATE: 3-5-07 It's hard to say how Hannah's seizures are doing. One day we see more than other days and sometimes they change so we aren't sure if it is a seizure. She still continues to sleep a lot and sometimes in between she can be awake for hours and hours! tomorrow, tues March 6 she has a neurology appt. It is always so hard to explaing things to him and for him to know what to do for her. Please pray that we can figure things out while there... There have been so many “bugs” going around that I haven't taken her out much... joan UPDATE: 2-22-07 Hannah has been running a low grade fever for a couple days. She had diarhea yesterday. She is just not acting like she feels good. her daddy was home sick from work on tues but she hasn't been near him. Of course, that hasn't helped the seizures any. she also knows how to look really pitiful. Hannah has enjoyed having her cousin Haleigh spend the week with her. She is 6 yo and loves to read to us. Hannah liked her hannah montana cd. joan UPDATE: 2-15-07 I hadn't realized how much time has passed since I posted an update on Hannah Grace. She has been fighting some bug or something this winter but that seems a little better. She acts  like she is really annoyed or in pain and of course, can't tell us what the problem is. Her seizures have increased again this week. She had one that lasted 70 seconds...she is having a few more than usual, hopefully it's the weather. She is also sleeping a lot the last few days...as usual, it's her own schedule... she is wishing everyone a belated Happy Valentines  Day joan UPDATE: 11-17-06 I am sorry I forgot to update about Hannah. She is doing better, the extra meds helped open her up.   She and becky made out fine when we went out that night.   she is still a little "junky" and sleeping a lot. joan UPDATE: 11-10-06 Hannah's chest xray was normal for her, no pneumonia....she is a little better but she did the same thing during the night with her nurse. I am thinking it is thick secretions but we are doing everything we can think of to thin them. she has been sleeping a lot lately too. She is in such a deep sleep that her heartrate drops below 50 sometimes. Her dr thinks that is normal for a girl her age. Tonight, Friday, Chuck and I have plans to go out (which we don't get to do very often) Hannah's sister becky will be here with her til the nurse comes in at midnight or we get home :) please pray that she does good for becky tonight...she gets nervous if she thinks hannah is sick... thanks joan UPDATE: 11-7-06 Hannah has been doing about the same lately. With the change in weather her secretions have gotten very thick...yesterday she scared me a little...she must have had a mucous plug in her trach...she had a good night and today she slept most of the day...I woke her up around 4:30 and then she had a pretty bad respiratory problem....must have beenn another mucous plug...took me a while to get her comfortable. Her nurse said she still doesn't sound really good. I am going to call her dr tomorrow and see if we should get a chest xray. thanks joan UPDATE: 9-26-06 Hannah and daddy made out fine this weekend...except for an episode with her feeding pump...chuck won! :) No one saw seizures since I left...Praise the Lord... My mom and I had a really good trip. We helped Jenn pack her kitchen to move next weekend. It was good to spend time with them alone, when they come home we have to share them :( This was the first time I have been there for a year but jenn gets to come home quite frequently...sometimes with her husband, Bob but most of the time, just her... thanks for the prayers joan UPDATE: 9-22-06 Friday  9/22/06   Hannah has been doing about same...seizures had slowed down a lot for a couple weeks but now they are back as usual.  With the changes in weather, secretions are crazy again...   please pray for Hannah and chuck (her daddy) this weekend.  I am leaving in a few minutes to visit my middle daughter with my mom and won't be back until Sun or Mon.  Jenn lives 5 hours away and this is the first time this year to go see her...chuck is working from home today and will have to take care of Hannah too...he helps me but doesn't have to do her full care very much...pray for them...Hannah is the hardest child to change a diaper on :)   I know mom and I will have a good time...pray for us traveling too...I have never driven there by myself... joan UPDATE: 7-10-06 Tomorrow, Sunday July 9th Hannah Grace will be 11 years old!   Praise the Lord \o/   We increased one of her seizure meds almost 2 weeks ago and are still seeing the same # of seizures.  today, she has had more than usual.   I don't know why.   I told her since she is having so many  today, she can't have any for her birthday tomorrow :( thanks for the continued prayers for Hannah and our family \o/ joan UPDATE: 6-26-06 Thanks so much for all the prayers for Hannah...she didn't have any more seizures after her 9:00 meds.   She only had a few seizures today.   She is still congested...she has a dry cough and sneezed a few times.  so, maybe she is getting a cold...I don't think Hannah has ever had “just a cold” joan UPDATE: 6-24-06 Hannah has been having a few more seizures today.  I am not sure why...please pray that she can settle down and sleep now without more siezures.   She has also had more secretions that she doesn't want to cough out in the last couple days... please continue to pray for wisdom and strength for us. joan UPDATE: 6-9-06 Hannah saw the pulmonolgist on Tuesday   while we were there he did repeat blood work and a chest x ray…her lungs sounded good but just to be sure we did the x ray.  Her white blood count was down to 10,000 so the antibiotic must have worked.  The other blood work looked good too.      He told me to stop using one of her nebulized medicines that can be very drying.   She still has the very thick secretions that are hard to get out…we are hoping that is a  lot to do with the weather.   Her seizures are about the same…some days we don't see as many as other days.   Most of them now are lasting longer (up to 45 seconds)   and very intense.  We are still watching them to see if there is a pattern or anything.  I think they are a lot of her problem.   Thank you so much for the continued prayers  for Hannah and our family.  I can really feel the prayers and encouragement.  Hannah and I both appreciate them… joan UPDATE: 6-5-06 Hannah Grace   6/4/06   OK, now I don't know which is worse, Hannah being hyper and out of control or when she just lays there in a daze for hours.  She can sleep for long periods of time and then stay awake for hours.  I never know how she is going to be from day to day.  It appears to be neurological but she never does things like that when  we see the neuro and it's hard to explain it to him…I have thought about trying to videotape it.     Somedays are better with the seizures and some days are rougher.   Hannah has still been having the thick secretions.  She has an appt on tues, 6/6 with the pulmonologist.  Everytime we see him she always sounds and looks good.   pray that  she has the thick secretions while we are there so he can see what the problem is.  They are so thick it's hard to suction them out.   Thanks so much for all the prayers and kind words for the prayer request for me for wisdom.  I have been so encouraged.  Last Sunday, the 29th of May I wasn't going to take Hannah to church but decided to at the last minute.  While waiting for the service to start a lady came over to me and told me that she prays for me everyday…she also prays for Hannah but a  special prayer for me…she will never know how much those words meant to me right then…I had never met her before. joan UPDATE: 5-28-06 Hannah Grace is still not feeling very good.  Her secretions are still very thick and hard to suction out.   She is still having seizures.  She is very hyper, almost out of control, arms and legs waving wildly….she has been like that for a while now but it is getting worse.  She sometimes does it before and/or after a seizure.  Her heart rate and  breathing are increased so it's hard to tell if it is the seizures causing all of this or her respiratory infection.  Sometimes I can hold her to calm her down but not usually.  Today she has either been sleeping or out of control.   I am not even sure how to ask prayer anymore.   I wonder if it is all the MRSA infection getting worse.  I don't even think the antibiotic is working but we do have a couple more days of giving it to her.  I am confused as well as her nurses and dr.   I do need prayers for wisdom and direction for all of this.  She wears me out sometimes and I don't even know what to do about it, especially since she can't control it and seems frustrated herself .  Thank you for the continued prayers for Hannah and our family.  I am so thankful that she has such good nurses to give me a break at night and for a few hours for me to go to physical therapy.   joan UPDATE: 5-20-06 I took Hannah to the dr yesterday for bloodwork and a culture of her secretions.  The dr called today and said that her glucose level is very low so we need to find a glucose monitor and check it again.   Her white cell count is way up ….so the dr is concerned.  Not knowing what is going on for sure she is putting her on 2 antibiotics.   She had been having more seizures and her secretions are very thick. joan UPDATE: 5-1-06 Hannah had been having a few more seizures so the dr increased one of her seizure meds.  that has been almost 2 weeks.  this weekend she has been having a lot more and they are more intense. I am wondering if the increase has changed her seizures or what is going on.   She has a lot more secretions too.  I have suctioned a lot more than normal.   The nurse said she has a slight fever but that could be from the seizures.     Thanks for the continued prayers for Hannah and our family. joan UPDATE: 1-20-06 On Monday 1/23/06   Hannah is having surgery to remove 2 teeth that are causing ulcers on her gums.   She will be staying overnight for observation.   The last couple days she has been very restless and not sleeping well.   She has a slight fever and I can't suction much out of her trach.   I am not sure if she has a trach plug or not.  I have changed her trach and done as much as I can for her extra.  Please pray that she can settle down and get some rest UPDATE: 12-24-05 Hannah has been her usual confusing self most of the time.  her nurses are even noticing that they can listen to her one minute and then she changes.. she always likes to be a "challenge"  :)     Hannah has been wheezing and tight in her chest  since yesterday...the nurse said she did better during the night but this morning she is wheezing again.   At first we didn't have a nurse scheduled tonight  (Christmas eve) but our wonderful nurse Mary is going to work, Praise the Lord!   I feel better now that she is wheezing because I am not always sure what she sounds like.  Please pray that we can stop the wheezing or find out why.   and also please pray that they can find us a nurse for NYeve. joan UPDATE: 11-12-05 just got home from getting chest xrays on Hannah.  She has bronchiolitis .. that is what started her RSV hospitalization in Feb of this year.   We increased her breathing treatments but she still sounds bad.  I don't want to have to put her in the hospital but if she keeps like this they want her to go to the ER.  the pulmo office said to only give it til about 7pm and it is almost 5pm now... joan UPDATE: 11-11-05 Hannah saw the cleft palate team today.   The plastic surgeon was showing me how they could do a repair on her cleft lip.   He looked at her gum and realized that she has 2 ulcers in her mouth from the teeth rubbing...it has been bothering her for a long time.  No wonder she has been crying and upset ..everything we do to her mouth hurts her :(      they will discuss everthing and get back with me.  They will pull at least those 2 teeth but we need to decide if we want them to do surgery on her gum and lip.     She is still wheezing and not feeling well.  thanks for the prayers joan UPDATE: 11-10-05 Hannah has been wheezing  today.   I don't normally hear wheezing myself but I could today.    We increased her breathing treatments.     Tomorrow, thurs (11/10)  she has an appt with the cleft palate clinic.  The main reason we are going is to see the oral surgeon about her teeth coming in wrong.   She will see the ENT and geneticist also. thanks joan UPDATE: 11-5-05 Hannah has been having a lot of thick secretions.  They are so thick that it is hard to suction them out of her trach.  I am not sure if it is just the fall weather or is she is getting sick.  We are doing a lot of extra things to try and thin them.  Started an antibiotic last night.   Bob, who  does the children's sermon at the beginning of the  our  morning worship service is going to "introduce" Hannah to them, tomorrow (11/6).   Our church has grown a lot and most people, adults and kids, don't really know who hannah is or why she is "like she is" and are afraid to ask.  I want people to be comfortable with other people who use wheelchairs. Please pray that she is well enough to go and that the Lord will guide bob as he does this "sermon"...that people will "understand".   Thanks again for all the continued prayers for Hannah and our family. joan UPDATE: 10-13-05 Hannah is having a few problems with exra secretions...i am praying it is just all this nasty rain and fall weather changing causing it.  She did get her flu shot this morning.  I need to get mine now.   Another prayer request...I have fibromyalgia and a lot of pain from it. The dr wants me to go to aqua therapy, 2 -3 times a week.  My problem is it is 1/2 hour from home and at various times.   I need someone that can stay with hannah that know how to suction her etc.  I am trying to work some of it out with the nurses but she only gets 4 hours extra 2 days a week... sometimes, it doesn't coordinate very well.   We are waiting for Hannah's new trach to come, hopefully soon.   thanks for all the continued prayers for hannah and our family joan UPDATE: 9-22-05 We are having a hard time finding just the right trach tube for Hannah. She has a cuffed one (has a balloon in it) to help with the big leak around her trach. that does stop the leak but it seems to be irratating her If we take some of the air out of it, the trach comes out :( The dr needs to look at her airway and see if she can tolerate a bigger size trach. the problem with that is getting an appt quickly...we already have one scheduled for oct 4. We are still having nursing issues. We are down one nurse right now and didn't have one saturday night. They finally found someone for the shift tonight and she may be interested in working some of the open shifts. Praise the Lord she said she could work tonight \o/ thanks for the continued prayers for Hannah and our family. I forgot, please pray for my family this weekend...I am going to FL with my mom to see my sister. We are leaving friday and coming home on monday. Chuck has never had Hannah for this long by himself. Becky and the nurses will be here when he isn't...so pray that he can find nurses for friday and monday. joan UPDATE: 8-27-05 Hannah Grace has been fighting a bug or infection this week.  The dr put her on an antibiotic yesterday and did some cultures.  She seems to be better today.  She got her first pressure sore on her tailbone this week....we have had to work aggressively on that so it won't happen again...made all of us feel guilty.   Chuck is on an antibiotic too...says he is feeling a lot better today.  Please pray for her and for us this weekend..Chuck and I are taking some furniture and things to our middle daughter Jenn and her husband, about 5 hours away.  It will be a much needed break for us but Hannah will be home with her sister Becky and the nurses...Pray that things go  ok here at home.   She has had a few seizures lately that are lasting a little longer...waiting for  a call from the neurologist.   I have an  urgent prayer need for  our oldest daughter Becky, she is 24 yo.  She is making a lot of decisions that aren't following the way she was raised or that are pleasing to the Lord..thanks again joan UPDATE: 8-1-05 Hannah has been running a slight temp and crying a little over the last couple days.  She does have an appt with the neurologist and pulmonolgist tuesday and on friday and appt with the dentist.  I don't want to miss any of them, they are important...she has some teeth coming in very strange and they look painful.  The pulmo is going to put a small scope down her trach and hopefully increase the size of her trach, she has a big leak around the one that she is wearing and that causes a lot of trouble, especially with the vent.  The neuro is going to discuss the results of the 24 hour EEG and talk about her meds.  Seizures are about the same.   We are having a lot of problems with our nursing agency.  The nurse that was on a leave quit when they were rude to her.  the manager is making a lot of problems with the nurses and I am tired off him lying to everyone, including me.  It's a long story but please pray that we can find a local agency that can take our case and provide what is needed.  I think the 3 of my main nurses are changing with us.   this is very frustrating, especially now, chuck is sick and I am trying to take care of both of them.   thanks again for your continued prayers for Hannah and our family joan UPDATE: 7-26-05 Hannah's main nurse was on vacation last week.  The agency called yesterday and said that she wasn't going to be back last night.  Her other nurse worked last night and they just called her to work tonight...I told her not to feel bad since she hasnt slept...she said she could work wed night.  They told her that the nurse is taking a leave of absence effective immediately!  She is normally here 3 nights a week....please pray that they find someone tonight..and if not, multiply my sleep. and please pray for this situation.  the agency doesn't treat the nurses well anyway...the only reason they stay on is because of Hannah.   She has also been having more seizures lately...the neuro increased one of her meds and we have an appt next tues.  I don't want a repeat of her hospitalization in May.  We will get the results of the 24 hour EEG then and discuss her meds...   I did get the results of my sleep study.  I do not have sleep apnea but have very broken sleep.  I only slept 1 time of about 10 minutes of REM sleep all night.   The dr changed some of my meds...so it is hard for me to stay up with how sleepy I get...thanks joan UPDATE: 7-9-05 Praise the Lord \o/ Hannah is 10 years old today! Another milestone. She has been doing about the same with her seizures, etc. The respiratory therapists brought the vent over for her this week. She is using that instead of her usual CPAP machine. We can give her more pressure to help keep her lungs open more and when she is sick, we can change the settings and put her on vent settings. It will be a lot easier for me to take her places. joan UPDATE: 6-30-05 Hannah is going today to have her 24 hour EEG done. Someone has to stay with her the whole time because we have to click a call button connected to the machine everytime we see a seizure or what we think is a seizure. Most of my family can't help because of work. My sister in law Pam is a nurse and is going to come help tonight so I can sleep some and my middle daughter Jenn is postponing her trip to *VA til tomorrow to help if I need her... I have to drive her there and back. I just realized tomorrow is the start of the 4th of July weekend. Please pray for me to get enough sleep and for travel mercies along with your prayers for Hannah. My doctor thinks I may have sleep apnea so I am going for a sleep study for myself on the 5th...the hours are the same as Hannah's nursing so that is not a problem. I do get sleepy in the car but I do a lot of things to make sure I stay awake when I am driving...I have precious "cargo" with me :) * Jenn and her husband Bob have just moved to VA...please pray for her finding a job and for him going to college. thanks again.. joan UPDATE: 6-23-05 Hannah has been doing about the same..her seizures are about where they were before we went to the hospital. She is still scheduled for a 24 hour EEG next week. We had been having trouble with her pulmonolgist and got a second opinion from another pulmo at another hospital. We liked her but decided we really don't want to change hospitals now. We like it at AI Dupont. We decided to change to a different pulmo at Dupont and have the first appt with him on friday. I am still uncomfortable with changng drs at the same place...I don't really want to run into the old one :) please pray that the appt goes well. When Hannah was in the ambulance last month I noticed she had a knot on the base of her thumb. It is still there a month later and we aren't sure what it is. We are going to see a local orthopedist on tues. If it a cyst or whatever they can take care of it there..it doesn't appear to cause her pain though. Thanks again for all the continued prayers for Hannah and our family. Her nurse's grandmother died and will be buried on friday. We wanted to go but that is during hannah's appt with the dr. Please pray for her family. joan UPDATE: 5-31-05 Hannah and I came home this afternoon. She is still having seizures. they are not as bad as they were when we went in though. Her meds are less than before, but it takes a while for them to change, so that makes me a little nervous. They are weaning her off her phenobarb. the dr thinks that was making her other meds not work as well. They said they may never find a reason for the increase in seizures. they did a short EEG on friday afternoon but that was after all the seizures so nothing new. We are both glad to be home but continue to pray that the seizures won't get worse. Hannah had a new roomate before we left. Her name is Chrissy. She is 16 years old. She was a "normal" 4 year old until she had a vaccination. She has continued to have more things wrong and is not getting better. Now, she is a normal 16 yo who can't walk, talk, see or move by herself. She may be put on a ventilator full time...her parents are dreading that. the whole family needs a lot of prayer. We are going to try to stay in touch through email. thank you so much for the continued prayers for Hannah and our family. joan UPDATE: 5-30-05 I haven't had time to send an update but Hannah is much better today. Saturday she had 12 seizures in less than 2 hours and the neuro on call made more changes to her meds. She is actually getting less of most of her meds but it is working for her...I didn't see any of her typical seizures yesterday or today, just a couple times she flung her arm out when asleep and that only lasted a few seconds...if that :) we are getting her on her normal medicine schedule today. Hopefully we will go home tomorrow (tues) thanks joan UPDATE: 5-28-05 Friday 5/27. Hannah will be in the hospital at least til tuesday because of the holiday weekend. the seizures have lessened but the ones she has are affecting her breathing more. the neuro had increased one medicine yesterday and reduced it back today...he said you can live with seizures but you can't live without breathing :) she has been coughing and gagging on her secretions a lot this afternoon. I am not sure if it's the seizures, med changes or if she is getting sick. I hate seeing her like this... Please pray for hannah's rooomate, denzel. He is a lot like hannah...he is 12 yo with CP and trach, seizures, heart etc. He has been here for over a week and today was supposed to go home but we has a fever and they think he is sick. thanks joan UPDATE: 5-26-05 I finally was able to get to the computer for the first time since Monday. today has been a better day with Hannah's seizures than the rest of the week has been. they are still making small changes to her meds. The seizures were coming every 2 to 3 minutes but now it's about 10 minutes between them. She is sleeping a lot more today too...she does that a lot with medicine increases and I am sure all the seizures are wiping her out. She was moved from the PICU to the regular floor last night, they finally had a bed available. I am staying at the ronald mcdonald house so I am close if they need me. We do have a phone in Hannah's hospital room so just email me if you want the phone #. chuck and my family all have the #. Thanks so much for all the prayers. they still haven't come up with any physical reason (like being sick) for the sudden increase in seizure activity. joan UPDATE: 5-23-05 Currently: Hannah is on her way to AI DuPont...the children's hospital she goes to...I am getting ready to go now, just wanted to post a quick update...she was still having lots of seizures on the way to the hospital...they sedated her and I only saw 1 after that...bloodwork looked good...still not sure what is causing the increase in seizures... not sure when I will get to the computer again... joan Hannah is having more seizures today...yesterday they started increasing. I have a call into the dr to see what I should do...it's very frustrating to not know who to call and when. If I call the neurologist they always put me through to a nurse practioner instead of him. joan UPDATE: 5-19-05 Hannah saw the pediatrician this morning. They did bloodwork and got it on the first stick! Praise the Lord \o/ they are doing it stat and will let me know if something shows up. joan Hannah is still having more seizures. Some of them are shorter but the amount has increased. Her regular pediatrician is on maternity leave so we are seeing another dr in that office at 10:00 this morning. I am hoping they will be able to get blood drawn from her to see if her electrolite levels are messed up or something. Please pray that they can get the blood with as few sticks as possible...Hannah is a very hard stick for blood. I am having trouble when I call the neuro office. the nurse practioner and is the one that keeps calling me back and we seem to have a communication problem :) I am praying that I can somehow talk to the neuro himself. thanks joan UPDATE: 5-12-05 Hannah has been doing ok lately. She had stopped having her "regular" seizures when she got RSV in Feb. A couple weeks ago she had a couple of them and then we didn't see anymore...until yesterday...she suddenly started having the seizures again (3months later). Today she had 8 of them in a few hours. We don't know why she is having them...the nurse said she may be coming down with something. So far, she is ok except for the seizures. I hope this doesn't sound too confusing :) we can give her rectal valium if she continues to seize like she did this morning. That is just a short term solution. We will continue to watch her. Her daddy is turning 50 years old tomorrow and we are having a party for him Sat. Please pray the seizures dont make it a bad birthday for him. Turning 50 is bad enough alone LOL Thanks so much for the continued prayers for Hannah and our family. joan UPDATE: 3-31-05 we saw the neuro for Hannah Grace on Monday. He made me feel better about things. He said that it's not unusual for seizues to suddenly change. Hannah goes for an EEG on Wed, 4/6. He said if that short EEG doesn't show a lot he wants her to have a 24 hour EEG. He said if this EEG showed seizure activity that we weren't sure of we will discuss things after that. She grabbed his finger real tight like she does and he said that is something she can't control. He wasn't even sure if that and other things she does are seizures. Tomorrow, 4/1 she has an appt with the pulmonolgist. I need to find someone to ride with us. I was going to cancel it since we didn't do the sleep study yet and we are probably going back to an new pulmo at duPont. this is a followup from the last appt. thanks Joan UPDATE: 3-29-05 Thanks so much for all the prayers. The agency wasn't able to get a nurse for last night but we took turns staying up with Hannah. Her neuro appt is in the morning...this will sound strange but I am praying that she will have what I "think" is a seizure when we see the dr. thanks again joan UPDATE: 3-17-05 Hannah is doing better since her round with RSV. Her cough is better. Her seizures have changed and now it is hard to tell when she is having a seizure. She does have an appt with the neuro on tues (3/29). Not sure how to explain what we see that could be seizures. We have increased one of her seizure meds. Today is Easter sunday and we found out last night that her nurse scheduled to work tonight has pneumonia and had to call out. So far, they have not found anyone to work. Not surprising since it is Easter. Please pray that they can find a nurse and if not, that the Lord will multiply our sleep. We will take turns staying up with her. She needs 24 hour "awake" care. Thanks for the continued prayers for us... joan UPDATE: 2-22-05 Update: 2/22 10PM We just got home from the hospital a little while ago. Hannah is still sick and has the bad cough but she is a lot better than she was Sunday. We are all glad to be home. I think she was glad to feel our "skin"...they had everyone wear gowns and gloves everytime we touched her since RSV is so contagious. They have a real epidemic with it this year. We are going to have to keep her away from other people for a while so she doesn't give it to them or so she doesn't get something else since her resistance is so low. There was another baby there, only 11 months old he has it too..but a lot worse. He had to have surgery to drain the fluid from his lungs. He is sedated on a vent and will probably be there a long time. I told his mom that we would pray for him too....his name is Joshua. Thanks again for all the continued prayers...I am sure we will all sleep better tonight. joan Hannah Grace, Monday night 2/21 Hannah is doing much better today. They took her off the vent settings and put her back on CPAP. Her breathing is a lot more relaxed. We are hoping that she will come home tomorrow, Wed. I have to take all of her respiratory equipment we use at home for them to check out and make sure that she will tolerate that. If she does ok, we will come home. She will still be contagious for a while, so we will have to use caution...especially since my new nephew Joshua Ryan was born about an hour ago!! Praise the Lord! We are still having to drive back and forth, the Ronald McDonald house was full. thank you for your continued prayers. joan UPDATE: 2-20-05 11:19PM: Hannah Grace got admitted to the hospital today, Sunday. We found out that she had RSV, it's a very contagious respiratory virus that in a normally healthy person would be a cold but is mostly common in babies. We were shocked that is what she has. They finally got her settled in the PICU on a vent around 8pm. It was hard to leave her but there wasn't any place to stay til I can check it out tomorrow. She was resting comfortably when we left. Will update as I can...They hadn't read her chest xray yet so it may not be pneumonia but bronchiolitis. Will find out more tomorrow. The nurse said we brought her in at just the right time...her fever went up to 103 while we were in the ER. Thank you for all the prayers...please pray for us for driving back and forth or whatever we have to do...we are about 2 hours from the hospital and the weather is supposed to be bad later tonight.... here is a link for RSV http://www.rsvinfo.com/ joan Hannah is not a lot better this morning. She is trying to feel better, but her breathing is still not mormal for her. I am calling her dr so she can call the hospital. We are probably going to Children's In DC. We just started seeing the pulmo there but we have never been to the hospital there so we aren't familiar with anything. I will try to update if possible but won't have access to my address book...it has been so long, a few years since she has been in the hospital that I am not prepared like I used to be... thanks joan UPDATE: 2-19-05 Hannah's fever went down a little last night but now it is back up to 102. I am calling the dr at 9am and getting an appt...they are in on saturdays for a couple hours. She is still miserable and not our usual Hannah. We are still slowly feeding her an ounce an hour of pedialite with her feeding pump so hopefully she isn't dehydrated. Thanks for all the prayers joan We just got back from taking Hannah Grace to the dr. They did a nasal swab to see if she had the flu and it came back negative. We were both shocked since her symptoms are just like the flu that is going around. She gave her a shot of rocephin (a strong antibiotic) in the office and we are starting her on cipro. She is still running the high fever and the dr says she does have pneumonia. If she is not better in 24 hours we will have to take her to the hospital. She is still miserable and not like our usual Hannah. Please pray that the antibiotics work and we can keep her home. If she isn't better they will need to do bloodwork etc to see what it is...thanks joan UPDATE: 2-18-05 Hannah is not any better this morning. Her temp is going up and she has lots of secretions in her mouth that she won't swallow..of course with all the pain, coughing and fever she is having more seizures...that is common when sick. I have a call into her pediatrician to see what we should be doing different. She hasn't been sick like this in a couple years...thanks joan UPDATE: 2-17-05 Hannah is miserable. I think she has the flu or a bug. She has a fever, is coughing a lot and gags from all the secretions. She has had diarhea too. We are doing all we can but its so hard to watch her be miserable and not be able to tell us what is wrong. joan UPDATE: 2-10-05 We saw the new neuro yesterday. He wants Hannah to have an EEG and see him again in a month. He thinks we may be able to change her meds around some or maybe retry some she was on when she was very little. He also wants me to find out what the top doses of all the meds she has been on. I am not sure exactly where to start but I will call her pediatrician. The pulmonologist also wants her to have a sleep study so please pray that they can combine them and do it soon. I am not sure how long it usually takes to schedule something there. That is another area of prayer. We are praying about changing where she sees her drs and the hospital. These drs are from Children's Hospital in Wash DC. Where we see the drs is only an hour from home and when we take her to AI DuPont it takes over 2 hours, since we see all her drs at the hospital there. I just want to do what is the Lord's will for Hannah. Thanks again for all your continued prayers for us. BTW, Chuck and I thank you for all the prayers for his job. He started the new job a few weeks ago and really likes it... joan UPDATE: 2-8-05 Hannah Grace update: Wednesday morning at 9am Hannah has an appt with a new neurologist to discuss her seizures. This a dr from Children's Hospital in Wash DC. This will be the first time I am driving there. Please pray that we will be able to get some answers to our questions and pray that I remember everything I need to tell them or ask them about her seizures. joan UPDATE: 2-3-05 Hannah Grace update: Hannah seems to be getting a cold or respiratory infection. she has been coughing a lot and has a lot of secretions, mainly in her mouth and she doesn't swallow them...her throat looks to be a little red so that could be why. She is running a low grade temp. Some days she has a lot more seizures than others but we are seeing a new neurologist next week. thanks again for the continued prayers for Hannah and our family. joan UPDATE: 1-8-05 So many people have asked how Hannah is doing so I thought I would post an update. Since we changed pulmonologists and changed her respiratory nebs she is doing better with that. Praise the Lord \o/ The seizures are the same, no change anyway, more or less. She does have periods where she sleeps all the time or just lays there like she is asleep with her eyes open. I need to schedule her sleep study to see if everything is ok there. I also have a big Praise the Lord \o/ Chuck got hired for a computer contracting job that he wanted, he will start tuesday! This is the first job he called about before he got laid off. They even gave him $1 more per hour than he wanted! That is definately the Lord's timing! He hasn't worked since Sept. Thanks again for all the prayers for Hannah and our family joan UPDATE: 12-26-04 Hannah has been having more seizures today, Christmas. She has a slight fever and is getting a new tooth so I am praying that is why. I told Chuck that I prayed that she wouldn't have many seizures today since we would be around a lot of family...he said that maybe they needed to see her seizures. Thanks so much for the continued prayers. Chuck is waiting to hear back from 2 job interviews this week. And thank you for the beautiful ornament for Hannah...she has a pink Christmas tree in her room (for a princess) and I put it on there...everyone who sees it remarks about it...just wanted you to know how much it is appreciated by so many people. joan UPDATE: 12-13-04 We took Hannah Grace to see the new pulmonologist on friday. It was a very good visit. We are going to continue to see her, even though her other services are at another hospital. We saw her at a new outpatient Center from Children's Hospital in DC. She made a lot of changes to her neb meds. So far, it looks positive. She suggested that we try to get her a bigger trach. I called and got an appt with the ENT for this thursday! She also wants us to do a sleep study to see how her CPAP and things are working. We will schedule that at the hospital in DC. Thank you for the continued prayers for Hannah. Another praise is that Chuck was called back for a second interview with the state of DE and then he got a call from another company who is going to interview him wed. So, we are praying he gets a job for the new year. joan UPDATE: 12-9-04 Hannah seemed to be doing better with her wheezing and tightness in her chest...but, now it is back to about the same as the weekend...she is still on the antibiotic and inhaled steroid. Thank you for the continued prayers joan We have been very frustrated with Hannah's current pulmonologist. She never knows what to do for her. I sometimes feel like it is a waste of time to see her. We have had problems with her before. Her pediatrician wants us to see another dr. I called today and they had an opening for tomorrow morning, Praise the Lord...please pray that she can at least give us some help with all her pulmo issues (lungs). This dr isn't at her regular hospital so everything there will be new...I feel like maybe this will be a good time since she is still having problems with congestion and coughing now. joan UPDATE: 12-3-04 Hannah had been feeling a little better but now she is back to wheezing and sounding tight in her chest. We started her on an antibiotic yesterday for her thick secretions from her mouth and nose....she acts like her throat hurts and wont' swallow her secretions like she normally does. she is miserable so I started her on a low % of oxygen to help her rest better....the dr said to call back if she isn't better by monday... joan UPDATE: 11-25-04 Hannah seems to be feeling better but still wheezing a little...and her fever is still up a little...it's hard to take her out when she is like this...thanks so much for all the prayers for Hannah and our family... BTW, chuck does have a job interview next wed...thanks for the prayers about a job too... Happy Thanksgiving... joan UPDATE: 11-20-04 Hannah seems to be a little better today...since we arent' sure exactly what is going on, the dr did bloodwork and took a urine specimen and also trach and throat cultures. We won't get the results of that til next week but her fever is down and she seems a little more comfortable. Thanks for all the continued prayers for her and our family. joan UPDATE: 11-19-04 Hannah has not been feeling well this week. We know she has an ear infection and started her on ear drops for that. Today she is still running a fever and her heart rate is staying up which means there is infection or pain. I am going to call her pediatrician and will try to update later. thanks joan UPDATE: 11-6-04 It has been a while since I posted an update on Hannah Grace. She is staying about the same with her seizures. Some days we see more than others but she is still our little trooper. She goes through stages where she is either sleeping a lot or restless and can't sleep. I know a lot of it is all the meds that she is on for her seizures. We had to turn down the job offer in SC, we couldn't get the answers we needed for medical treatment for Hannah. Chuck is still not working but has a few positive answers to his resume and applications. We are still waiting for the Lord's leading and timing on a job. Thanks again for all the prayers for Hannah and our family. joan UPDATE: 10-12-04 Hannah has an appt with her pulmonologist (lung dr) this afternoon, tuesday. Hannah has been having a lot of thick secretions and isn't coughing as forcefully as she used to. i don't know if she needs a bigger size trach or what. Sometimes this dr is hard to get to understand what we are trying to say. I think, like most of Hannah's drs, she is not sure what to do for hannah since she can be a challenge :) The company in SC wants to hire Chuck but right now it looks like the Lord is shutting some doors with Hannah. Please continue to pray for guidance for us. With all Hannah's needs, it's hard to know where to turn to move everything to another state. It's about 10 hours from here. We are open to whatever the Lord wants us to do. Thanks again for all the continued prayers for Hannah and our family joan UPDATE: 10-6-04 We are still praying about what to do about Hannah's seizures. Right now I feel like the Lord is telling us to wait to make a decision. She is still having a lot of thick secretions that we are hoping is the weather changing. She does have an appt with her pulmonologist on tuesday. Thank you for the continued prayers for Hannah and our family. chuck is still looking for a job. He has a phone interview set up soon but the company is in South Carolina which is about 10 hours from here...we are depending on the Lord for guidance so we will go if it's His will....I would much rather stay here, relocating with all Hannah's medical needs seems like a nightmare right now. And we have a lot of work to do on our house before it could even be put on the market. But, I do know that He will provide what we need...thanks again.. joan UPDATE: 9-30-04 I'm sorry I haven't had a chance to send an update...I am just trying to process everything we talked about with the neurologist. The news was discouraging but what I expected him to say. He said she is not a candidate for the vns surgery...we weren't comfortable with her having the surgery anyway. We discussed all the medicines she is on and the meds that she has been on in the past. The only other medicine that she hasn't been on has very serious side effects. The only other 2 alternatives we have is to leave her on the meds she is on or the ketogenic diet. She is at the top dosage for each of the 4 seizure meds she is on so we can't increase or decrease any of those. The keto diet requires a fluid restriction and we have to give her extra fluids to help thin her secretions. The neuro didn't actually say what we should do but from talking to him and Hannah's nurses we feel we should just leave her where she is now. I need to Praise the Lord for traveling mercies...we went to eat after her appt and it wasn't even raining so we ran in the store for a few minutes. While we were in there the rain started really heavy. We left there and it took us 4 hours to get to my mom's house which normally takes less than 1 hour. The rain was so heavy there was flooding. On one road we were on we had to turn around twice. There was so much flooding that we had to ride on the sidewalks to keep our car from flooding. I had to climb over the seat to get Hannah's nebulizer and feedings. I am so glad I could do that. We were frustated because it took us so long to get anywhere but as we were listening to the news reports they had closed some roads that we had been on and another road the cars were at a standstill for over 2 hours. There was even a tornado not too far behind us. Thank the Lord for His protection \o/ and that we made it home safely. joan UPDATE: 9-28-04 Thank you for your continued prayers for Hannah. She is still having seizures. We have an appt tomorrow (Tues) morning with her neurologist. We will discuss her MRI and a possibility of surgery. We also need to make some decisions about her seizure meds. She has a lot of secretions and coughing right now. I am hoping it is just the weather and not her getting sick. I will try to post more when we get back. It's usually a long day since we live so far from the hospital (about 2 hours). The weather is supposed to be really bad from Jeanne tomorrow. Please pray for Chuck, he is still looking for another job. It is getting very discouraging for him. Thanks again for all the prayers for Hannah and for us. joan Re Added: 9-23-04 Originally Added: 7/18/04 We lost contact. Condition: Hannah Grace, 9yo : Deletion chromosome 1 q 21-25 profoundly deaf, visually impaired, bilateral cleft lip and palate, seizures, trach (laryngotracheal separation, tracheomalacia CPAP), Gtube, Von Willebrands, Severe growth and mental retardation. Her Story: Where do I begin telling Hannah’s story? We had tried for years to have a 3rd child. We had about given up thinking the Lord had given us all the children we would have. When Becky was 13yo and Jenn was 11yo, we found out we were pregnant! We were very surprised and excited…and a little scared. We had been through all that and our girls were a long time out of the baby stages. When she was born, we were 37 and 40yo, the girls were 12 and 14 and we had been married for 17 years. We just celebrated our 25th wedding anniversary. I had a pretty uneventful and wonderful pregnancy. I bled a little for the first 4-5 months. I thought I was losing her but the drs said that was normal. During my pregnancy they had only done 1 ultrasound on me. They said the baby was small so they said the date was wrong and moved my due date back almost a month. She would not give a profile during the ultrasound no matter what they tried. If they had gotten a profile of her they would have seen her large cleft lip because of the way it was shaped. Even though they didn’t find anything wrong then I knew in my heart I was carrying a very special baby. I didn’t tell anyone thinking it was because of my age that I felt that way. I was 37yo when she was born and most of the time you hear of older parents having children with downs and things like that. I look back and wish that I had said something to someone so we could have prayed about it. My friend Carol also felt the same way for me but was scared to say anything. Things went well after that. I had craved salads and didn’t want meat or sweets so I lost 5 pounds while I was pregnant and after delivery had lost 20 pounds (sadly, I have found it all again 7 years later!) Two weeks before she was born the dr asked me how big my girls were at birth. Becky was 6 lb 13 oz and Jenn was 6 lb 11 oz. He guessed by the size of my uterus that the baby was going to be around 6 ½ to 7 lbs. He was shocked when he delivered her and she was so small. The first thing he noticed was the very obvious cleft lip and palate. Then the small size. He thought she was about 5 lbs but was surprised that she was only 3 lb 14 oz, full term. I still say she was 2 weeks late but because of her size they said she was 3 weeks early. I felt a kind of relief when he said she had a cleft lip. She appeared to be healthy and beautiful other than that. Her APGAR scores were a 9! They whisked her away to check out any other “anomalies”. They found that she also had a very deep bilateral cleft palate along with the bi